Musings on a doctor visit - hip dysplasia, etc.

[Guest guest]

Priscilla, was Evan’s hip dyplasia called Perthes disease?

kathyR

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Priscilla

Sent: Thursday, December 28, 2006

7:52 PM

Down Syndrome Treatment ;

DS-Nutrition@...; DSTNI ;

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Subject:

Musings on a doctor visit - hip dysplasia, etc.

I took

Evan to the spina bifida (SB) clinic here last week and wanted

to post some of the stuff discussed in case it helps anyone else on

here who feels like they are constantly bucking the docs.

The orthopedic clinic recently used Evan as a case study and Evan's

feet problems were presented to a room full of docs, fellows and med

students. There were at least 4 or 5 of the top attending docs there

and maybe 20-30 docs, residents, fellows or med students. Their

consensus was that Evan should have a surgery on his feet that would

involve putting screws in the side of the ankle that was growing

faster than the other so that the other side could catch up. The

screws would remain and grow into the growth plate and/or bones of

the foot. I don't like the idea and have researched quite a bit on

it.

At the SB clinic I for the second time talked to his orthopedic

surgeon regarding this surgery. I told him of a doc in Missouri who

fixes club feet without surgery and who said in an email (he hasn't

seen Evan) that he would not put screws. We talked extensively and I

expressed that I possibly was going to see this other doc and then I

told him I felt like I was going against some top experts who had

been in that room recommending this and that I knew I didn't know as

much as they did, yet I didn't want to leave any stone unturned in

avoiding surgery. The ortho surgeon said to me, " You know what the

best thing you've ever done for Evan was? "

I couldn't imagine what he was going to say, but here it is:

" The best thing you've ever done for Evan was when you refused hip

surgery for him several years back. "

I couldn't believe it since this guy was one of the ones recommending

the hip reconstruction (for hip dysplasia) surgery way back. He

further said that when something isn't working right on the body

their first reaction is to suggest they fix it but in Evan's case he

was doing great without it and if he'd had the surgery . . . well . .

.. I was like, " Well, thanks for telling me that. Certainly makes me

feel better and not like I'm always bucking for nothing. " When I had

researched this, the odds were 50% success rate in Down

Syndrome and

50% success rate in Spina Bifida and since Evan has both, I didn't

think this was good enough odds.

We then discussed mainstream medicine a little and alternative where

I told him I thought Evan had been helped about 50% by mainstream and

50% by alternative. I told him I thought mainstream medicine was

this straight little narrow road and he interrupted to say, " No.

First, it's not even paved, and it's not straight. It's a primitive

dirt road full of curves. " I had to laugh as did he. It was a good

visit and we chatted about 30 minutes or so on Evan, etc. At least I

came away knowing I had to get the non-surgery Missouri doc out of my

system first before I think about this surgery. He told me the guy

in Mo. was

good, they had thought of trying to bring him here and

while he didn't think he could help Evan, he was agreeable to us

seeing him and making sure what was possible.

Not sure why I'm posting this other than to encourage everyone once

more to do the research before just going along with those docs.

Sometimes they obviously secretly agree with you when you buck them.

Priscilla Kendrick, married 29 years to Darrel and parents of 9 kids including

Evan, 10, born with Down Syndrome

and Spina Bifida

" My strength is made perfect in weakness. "

" My grace is sufficient. " II Corinthians 12:9 KJV

[Guest guest]

Actually, I think many docs feel the same way this guy does. I am a medical researcher, and work daily with docs (in peds). The key is to get that door open, and all too often tight schedules (and parent reluctance to push it) don't allow for this. I had a long interesting chat with our doc yesterday (Autism doc). She came into our appointment quite shook up because a parent had just chewed her out over the long wait time for an in person appointment. We talked about how so many parents get angry and frustrated with a lack of answers and help and how it can certainly bleed over into the parent-provider relationship, and create adversity. Around the medical center I often hear about "difficult" parents of kids with special needs, and I always counter with--don't tell me I am the expert in my child (I hear this all the time), yet expect me not to be "difficult"!!!!! I remind the doc/nurses I work with

that I was told in the NICU that I'd need to fight for my child--so how can they expect to be exempt? It's opened up some great talks--and I think that the doc/patient relationship IS changing--for the better. Just my 2 cents! Kim Not sure why I'm posting this other than to encourage everyone oncemore to do the research before just going along with those docs. Sometimes they obviously secretly agree with you when you buck them.Priscilla Kendrick, married 29 years to Darrel and parents of 9 kids including Evan, 10, born with Down Syndrome and Spina Bifida"My strength is made perfect in weakness." "My grace is sufficient." II Corinthians 12:9 KJV__________________________________________________

[Guest guest]

>>>>>>> Posted by: Kathy_R@...

Priscilla, was Evan's hip dyplasia called Perthes disease?

kathyR>>>>>>

No, I've never heard that term. Evan's is probably more related to

his spina bifida than the Down's although the low tone of DS

certainly helps the condition along. It started with subluxation of

the joint which then becomes full of material that doesn't belong

there. It pops in and out of place at times but doesn't seem to

bother Evan in the least. It's his right hip which the SB surgery at

1 month old showed the nerves, etc. of the spinal cord to be shorter

on that side. So he has a right side club foot, atrophy of the right

leg between the knee and ankle, etc.

Priscilla Kendrick, married 29 years to Darrel and parents of 9 kids including

Evan, 10, born with Down Syndrome and Spina Bifida

" My strength is made perfect in weakness. "

" My grace is sufficient. " II Corinthians 12:9 KJV

__________________________________________________

[Guest guest]

Doctors generally only have two tools: Drugs and Surgery. As the old saying goes, "If the only tool you have is a hammer, then every problem looks like a nail. Structural Integration practitioners (of which I am one) on the other hand, have a whole toolbox for dealing with structural problems with a non-invasive manual therapy approach. To find one in your area, check out theiasi.org. Foot, leg, hip, back, and neck problems are especially responsive to our treatments, as well as gait, balance, breathing, coordination, etc. ~. __________________________________________________

[Guest guest]

Priscilla,

I am sorry to hear Evan might need more surgery. Hope the Dr in Missouri has the answer for him. How are his bladder issues doing?

I am glad you did share about this Dr visit. It takes a while for most parents ( me included ) to come to the realization that Drs DON'T have all the answers and very often only have wrong answers. It's hard to always be 'bucking' what they say and endure some of the slings and arrows they are capable of throwing at you.

I have weeded out Drs who refuse to level or talk and only have Drs who talk to me like this one did to you. I am still not sure the GI Dr is as open as the rest, but I think he is. I have discovered the *really* good Drs are the ones who tell you up front they are making 'best guesses' on things and they that medical science knows very little. Her card told me that they don't totally understand how the heart works, but they have learned if you do A then B typically happens. But they have no clue WHY or why it doesn't always work that way for each person and that early on they learn to accept that and try to work with in what they do know. I think that's why Drs are so research dependent. I think they, above all people, know just how little they know. ;-) It must be scary to be able to wield strong drugs and surgical interventions all the while understanding all that you don't know! I guess I would

want lots of research behind me too. :-)

It's also been fun to see how alternative medicine is making in roads in the main stream! There is just so much of it going on out there, I think they are being forced to learn some things just to be able to treat with out interactions.

My Ped is very good at starting out with simple recommendations and life style changes before getting out her meds.

So all you new parents- always second guess medical personnel, from the specialist on down to your PT!

And the same goes for those 'expert's at school! You will always know your child better then any of them, and when in doubt, just always say you want to read and think about this before making any decisions. All Drs can respect that and it gives you time to think and plan your next move with out all that pressure.

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

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Musings on a doctor visit - hip dysplasia, etc.

I took Evan to the spina bifida (SB) clinic here last week and wantedto post some of the stuff discussed in case it helps anyone else onhere who feels like they are constantly bucking the docs.The orthopedic clinic recently used Evan as a case study and Evan'sfeet problems were presented to a room full of docs, fellows and medstudents. There were at least 4 or 5 of the top attending docs thereand maybe 20-30 docs, residents, fellows or med students. Theirconsensus was that Evan should have a surgery on his feet that wouldinvolve putting screws in the side of the ankle that was growingfaster than the other so that the other side could catch up. Thescrews would remain and grow into the growth plate and/or bones ofthe foot. I don't like the idea and have researched quite a bit onit. At the SB clinic I for the second time talked to his orthopedicsurgeon regarding this surgery. I told him of a doc in Missouri

whofixes club feet without surgery and who said in an email (he hasn'tseen Evan) that he would not put screws. We talked extensively and Iexpressed that I possibly was going to see this other doc and then Itold him I felt like I was going against some top experts who hadbeen in that room recommending this and that I knew I didn't know asmuch as they did, yet I didn't want to leave any stone unturned inavoiding surgery. The ortho surgeon said to me, "You know what thebest thing you've ever done for Evan was?"I couldn't imagine what he was going to say, but here it is:"The best thing you've ever done for Evan was when you refused hipsurgery for him several years back."I couldn't believe it since this guy was one of the ones recommendingthe hip reconstruction (for hip dysplasia) surgery way back. Hefurther said that when something isn't working right on the bodytheir first reaction is to suggest they fix

it but in Evan's case hewas doing great without it and if he'd had the surgery . . . well . .. I was like, "Well, thanks for telling me that. Certainly makes mefeel better and not like I'm always bucking for nothing." When I hadresearched this, the odds were 50% success rate in Down Syndrome and50% success rate in Spina Bifida and since Evan has both, I didn'tthink this was good enough odds.We then discussed mainstream medicine a little and alternative whereI told him I thought Evan had been helped about 50% by mainstream and50% by alternative. I told him I thought mainstream medicine wasthis straight little narrow road and he interrupted to say, "No.First, it's not even paved, and it's not straight. It's a primitivedirt road full of curves." I had to laugh as did he. It was a goodvisit and we chatted about 30 minutes or so on Evan, etc. At least Icame away knowing I had to get the non-surgery Missouri doc out of

mysystem first before I think about this surgery. He told me the guyin Mo. was good, they had thought of trying to bring him here andwhile he didn't think he could help Evan, he was agreeable to usseeing him and making sure what was possible.Not sure why I'm posting this other than to encourage everyone oncemore to do the research before just going along with those docs. Sometimes they obviously secretly agree with you when you buck them.Priscilla Kendrick, married 29 years to Darrel and parents of 9 kids including Evan, 10, born with Down Syndrome and Spina Bifida"My strength is made perfect in weakness." "My grace is sufficient." II Corinthians 12:9 KJV____________ _________ _________ _________ _________ __